22 Mar 2020
COVID-19 and MEN Research Study
In collaboration with our Medical Advisory Team and Trustees, AMEND has developed a research survey for those in the UK with MEN disorders who have had COVID-19. The survey can be completed by patients in the UK with MEN who have recovered from COVID-19, or by relatives of or health professionals caring for those who have sadly died from complications of COVID-19.
AMEND is making the question format of this study freely available to others so that it can be replicated in other countries and with other diseases. If you would like to view the questions within the survey, click on the link below to download the PDF file rather than opening the survey itself.
Complete the survey whether or not the virus was confirmed by blood test. Please take care when completing the questionnaire as incomplete or inconsistent entries will not be included in the published results.
Please only click on the survey link if YOU HAVE multiple endocrine neoplasia (types 1, 2A or 2B), and
YOU BELIEVE OR KNOW YOU HAVE HAD Coronavirus (COVID-19)
This page was last updated on: 21/09/2021
Results as at 21 September 2021 (updated weekly on Monday if needed)
A total of 49 complete self-reported responses have been received (MEN1 = 24, MEN2 = 20, MEN3 = 5), including 8 people who needed to visit hospital (6 for severe breathing difficulties: x4 MEN1, x2 MEN2, and x2 for problems relating to their endocrine condition). Of the 8 people who went to hospital, x4 were admitted as an inpatient for 1 night and x1 for 10 days (although no ITU care was needed in this case). No significant difference is seen in presenting symptoms between syndromes.
- comparisons with the general public are difficult since many of our members have been shielding or stringently social distancing to lower their risks of contracting the virus
- at the time that many people were experiencing the virus, paracetamol was the recommended pain killer, so people may have been avoiding ibuprofen
- these results to do not reflect the current level of infection – Just under half of the results (n = 21) are from infections from January to April 2020